Demystifying Disability: What to Know, What to Say, and How to Be an Ally

Emily Ladau: I think this is a great question to start out with and before I get to how I define it, I also want to be sure to emphasize the fact that it is okay to say the word disability. I think that so many people are afraid of the word.

We've been socialized to think of it as bad or negative or taboo, but there is nothing wrong with saying the word disability. And I define it pretty straightforwardly as a natural part of the human experience; it's just another aspect of what makes somebody who they are.

Rachel Salaman: What are some other ways disabled people define it?

Emily Ladau: There are so many ways to think about disability and what I try to emphasize to people is the fact that no two experiences of disability are the same, which means that no two people are going to fully understand disability in the same way. I say if you have met one disabled person, then you've met one disabled person.

And I want people to understand that even though there are negative connotations to the word disability, that doesn't mean that disability itself is a negative word, because we are the ones who put those connotations on the word.

When in fact really what it is, is another identity that a person can hold, an experience that a person can have, much in the same way that somebody would identify as Jewish or as queer or as Asian, right? It's just something that is within a human being.

Rachel Salaman: Right. Could you tell us about your disability?

Emily Ladau: Absolutely. So, I was born with a physical disability called Larsen syndrome. It's a genetic joint and muscle disorder. And so my mother and her younger brother have it as well, and it manifests differently within different people, but for me, I am a wheelchair user full time.

And so that means that I use a wheelchair for mobility purposes, and that is my personal experience with disability, is someone who navigates the world on wheels.

Rachel Salaman: And what prompted you to become a disabled rights advocate?

Emily Ladau: It has been a lifelong journey; I will say that. When I was younger I would say that one of the biggest compliments that you could give me was to say "I don't think of you as disabled" or "I forgot that you use a wheelchair," and I wanted people to see my disability as separate from me.

But when I was ten years old, I had the opportunity to appear on multiple episodes of the U.S.-based children's television show "Sesame Street," and when I was on that show, of course being so young at the time, I don't think that I fully realized the gravity and the weight of that, but I also think about it in hindsight as being really the launchpad to beginning to recognize the power of sharing my story and of embracing disability as part of who I am.

And so, as I got older, I really began to explore disability as being an aspect of my identity, and navigating the world with a disability is something that almost necessitates you becoming an advocate because you encounter exclusion and you encounter inaccessibility and you encounter discrimination.

And so, because of that I felt very compelled to make advocacy a career, and I don't think that that should be the responsibility of marginalized people to take that work on, but for me it has become a passion and it has become something that I recognize as so intrinsic to who I am that I couldn't possibly imagine myself doing any other kind of work.

Rachel Salaman: In your book "Demystifying Disability," which is so useful, you point out that disabled people are often presented in the media as either superhuman or subhuman – you touched on this a little bit earlier, and you say that this is exhausting. Could you talk about that and do you see it changing at all?

Emily Ladau: This is really important to think about. We have certain notions that we hold onto as a society about disability and so often that's either that disabled people are overcoming obstacles and we are so amazing and inspiring for existing, or we are seen as being less than whole human beings and we are seen as being less valuable and less worthy of taking up space in this world.

And those two sentiments are seemingly at odds, but both of them stem from this idea of disability as being the other and this idea of disability as being outside the norm, rather than, as I mentioned before, being part of the human experience.

And so there are people who think that it's inspiring that I have gotten out of bed in the morning as a disabled woman, and if you know that I'm not a morning person then yes, very inspiring [laughs], but otherwise there's really nothing inspiring about me getting up every day and living my life.

And if we're not simply looking at disabled people as inspirational for existing, for going to the grocery store, for being out and about in the world, then there's this expectation that we're supposed to become overachievers, and push ourselves to the limit, and climb to the top of mountains, and prove to people that our disability is no obstacle, but really that expectation is entirely unfair because we're just living our lives.

And then on the flipside of that, there's the assumption that we must be living terrible lives and that we're kind of a waste of space and resources. And so, I ask people, why can’t we just come to that middle ground where I'm not superhuman and I'm not subhuman, I'm not more or less, I just am? I am a person – there is nothing exceptional and there's nothing pitiful.

And I think that the only way that we're going to shift this kind of thinking is by beginning to educate ourselves about disability, to be having conversations about disability in the mainstream and not pushing it off to the side or treating it as a niche or taboo issue, because it's not.

More than one billion people around the world have a disability, and so statistically speaking you or somebody you know has a disability or will acquire a disability at some point in their life. And disability cuts across every single identity group, so it's not something that we should be relegating to the margins and marginalization.

We should be actively considering how we perceive disability and working to change that.

Rachel Salaman: Absolutely. And your book is about how to be an ally to the disability community. What is an ally and how important is it to create allies?

Emily Ladau: I think that when we talk about being an ally, we can very easily fall into the trap of looking at it as a title that we give ourselves, so we can say I'm an ally to a particular marginalized community. But it's not something that you can write on a name badge that says "Hi, my name is ally." It's not about giving yourself that title. It's really about taking meaningful action.

I always say that ally should really be a verb and not a noun, because what it's about is not calling yourself an ally, it's about being an ally, and to be an ally to the disability community is to recognize that you need to look beyond experiences outside of your own, whether you have a disability or not, because your experience is not the same as anyone else's.

And I think people so often are looking for a checklist or a guide and so they can get from the top of the checklist to the bottom and once they reach the end, they can get a gold badge that says, "number one ally" or "I was a good ally today."

And I understand that people want there to be that easy step-by-step process, but really, it's about treating each person as an individual and about engaging with each person on an individual level and recognizing that everybody has different support needs and everybody has different accessibility needs, that everybody has different ways of communicating.

And so allyship is not always about these broad, sweeping moments of advocacy. Sometimes it's just about knowing how to be a support for someone in a particular moment.

Rachel Salaman: Yes. And part of that is recognizing and avoiding ableism, which is something you go into quite a lot in your book. For those people who don't know this term, what is it?

Emily Ladau: Ableism is so often the type of discrimination that gets left out of conversations about discrimination, but I define it pretty simply as attitudes and actions and circumstances that devalue people on the basis of disability.

And there [are] multiple levels to it, so you can think about it in terms of internalized ableism which is the attitudes that we turn inward and direct it ourselves when it comes to our perception of disability. And then you can think about it in terms of interpersonal ableism, the interactions that we have on a day-to-day basis, the rude comments, the nosy questions, microaggressions if you will.

And then there's systemic ableism which is really discrimination toward people with disabilities baked into the systems in which we operate, and a really powerful example of this that I point to is public transportation.

Now if you think about many major public transportation systems, and I’m in the United States, I'm in New York, and so I regularly use one of the world's largest transportation systems, New York City's system, and it is not at all fully accessible for people who use wheelchairs, and so it keeps me from doing quite a bit because of transportation issues.

If you have an inaccessible transportation system, one that is not designed to include disabled people, you are then shutting disabled people out, not only from transportation, but also from opportunities to be educated, opportunities for employment, opportunities to seek healthcare, to socialize, to go exercise your right to vote, whatever it is that you want to do.

So systemic ableism is really shutting people out of systems because we are not actively thinking about how to be inclusive.

Rachel Salaman: And how can we push back against ableism, particularly systemic instances like the one you just mentioned?

Emily Ladau: I have so often said that you can create policies that are meant to break down systemic ableism, but you cannot legislate an attitude, and so as much as I am a proponent of advocating at a political level, whether that be local in your community or more broadly nationally, that's incredibly important.

But it's not so much about fighting just for the systems to change, it is also about fighting for the attitudes that allowed these systems to be created to change. It's about shifting the narrative of how we think about and talk about disability, how we portray disability in the media, how we perceive disabled people.

And so, breaking down systemic ableism first means that we need a mindset shift and I believe that that happens one person at a time.

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Rachel Salaman: In your book you have a chapter on disability etiquette, some dos and don'ts for those individuals to make a difference one person at a time. What are the most common breaches of etiquette that you encounter?

Emily Ladau: Speaking broadly, I will say the biggest issue that so many disabled people encounter is the fact that non-disabled people make assumptions about what we can and cannot do, or presume to know what is best for us, and I can give a very small, but very common example of this for myself.

When I am out and about in public and it's cold outside and I have a jacket, I will take it off and put it on just like anyone else, but the way that I put my jacket on, I flip it over my head and this is the easiest way for me to get it on by myself, and it is something that I learned to do when I was little and that I have always done, so I have my system in place.

But when people see me putting my coat on, they will often just try to grab it from me and help me get into it, which only serves to make it harder for me to get into it, even though they think they're helping, and so I really appreciate if a person says to me, "Hey, can I give you a hand?" or "How can I best help you?"

It's so much better than simply imposing your help on someone without first asking what that person needs, because a person knows best what they need. Don't make that assumption. Don't impose that help on them. Ask first.

Rachel Salaman: Yes. I suppose perhaps one reason why people don't ask is they're not quite sure of the words to use. They don't want to be patronizing, so it stops them saying anything. What tips might you have for someone who is just so worried about saying the wrong thing and offending a disabled person?

Emily Ladau: I completely understand where that fear is coming from because it's not as though we are actively taught how to communicate about disability, but I always remind people not to look at how we interact with a disabled person as being so much different than how we interact with someone who we assume to be non-disabled.

It's about engaging with another human being and I know that someone may be worried about offending, but keeping it simple and straightforward is really the best way to engage. Say "Hey, what can I do for you right now?" "Hey, what kind of support do you need in this moment?"

It's not about making a big deal out of things, and if somebody says "no, thank you" then take that at face value. Don't continue to try to insist.

I think that so often in an attempt to show benevolence and goodwill, people are insistent on providing help and they want to show that they're a good person who is well-meaning, and I understand that completely. So, people go from one extreme to the other where they're afraid of saying anything to they begin to just overdo it. Act like you would when you're talking with anybody else. Just ask.

Rachel Salaman: Yeah. So, talking about the workplace now, what are some ways to make offices accessible, starting with the physical infrastructure?

Emily Ladau: Starting with physical infrastructure is, of course, crucial because you want a workplace that is easily navigable, so you want to have ramps and you want to have doors that are easy to open or have automatic push buttons. You want to have a restroom that has an accessible stall and it has grab rails, right?

And you want to have enough room in the floor plan for people to be able to get around and things like that, and you want to be able to have lighting that changes based on sensory needs, and things of that nature, right? So physical infrastructure and the way that we set up a workplace is crucial in terms of how people get around.

That being said, I think that physical accessibility is not the only thing we should be focusing on. It's absolutely essential, and when I go somewhere, if I'm not able to use the restroom, that really ruins an entire experience for me. I need to be able to have basic access, but that being said, there's so much more than just physical considerations to really create an inclusive workplace.

Rachel Salaman: Could you talk about some of the other things?

Emily Ladau: Absolutely. So I think it's also about fostering a culture of inclusivity and accessibility, and creating an environment where people feel safe and welcome to show up as their whole selves at work and to be open about their disability experiences, and to feel like they can speak up if they do need support.

It's not that we should require anybody to disclose personal information about themselves, but in order to really be your best self at work you need to feel like you can bring all of you to the table, and so it's not just about that physical infrastructure, it's also about opening up opportunities for dialogue and for communication. For checking in with people.

A really good practice that I recommend is starting off meetings with a group of colleagues by saying, "Hey, let's just take a moment to do an access check-in. Is there something that I can do to make this more accessible for you? If you don't feel comfortable saying it in front of the group, come see me and we'll chat about it."

Or even check in before the meeting if you can to say "How can I make this more accessible to you?" So, it's about providing those openings for conversation, it's about being supportive and it's about giving people the space to speak up for what they need to thrive.

Rachel Salaman: If you're a disabled employee who wants to advocate for themselves in the workplace, what are some ways that they can do that, bearing in mind that they may not feel that they have the accessibility that they would like, so it could potentially be a difficult conversation.

Emily Ladau: It can be a tough conversation and I want to acknowledge that. In my ideal world, everybody would be able to speak up for what they need to thrive and be productive and efficient in a work environment, but unfortunately again so many people hold onto discriminatory attitudes and make assumptions about disability.

And so it can feel really overwhelming and uncomfortable to speak up for something that you need, but at the same time, I try to remind people that the main person you are hurting if you do not speak up for what you need is yourself.

If you are not communicating what would make something more accessible to you or what accommodations or supports you might need, it's your work that's going to suffer, it's your mental health, it's your wellbeing that’s ultimately going to suffer.

And so if nothing else, remember it's important to put yourself first and to take care of yourself first, and I understand that you may not get the answer that you want and that can make it incredibly challenging, but I think that being prepared to have these conversations.

Maybe practicing with somebody who is close to you, maybe engaging with a colleague who you know is supportive and strategizing, coming to the table with the options for potential solutions for supports already in place, have that preparation, take that time to feel like you're in the right place to have that conversation and then engage when it comes to advocating for yourself.

And I know that that feels like a lot of effort and it can take a toll and it can burn you out, and I don't think that the burden should be on disabled people to have to constantly navigate the world with an advocate's hat on, but at the same time if you're going to practice, do it in a place that feels safe first before you begin to take it into other spaces.

Rachel Salaman: And what can colleagues do to be allies, both in an office situation and also in online meetings which I imagine have their own challenges for disabled people?

Emily Ladau: Yeah, it's a great question, and in terms of engaging with colleagues, I think that one of the best ways to be supportive is simply by saying "I am here to support you if I can." If you notice that a colleague does seem like they may need some kind of assistance, take some time to check in with them, to have a conversation.

I am such a big believer in the power of communication and I know that now that many of us are continuing to work either remotely or in hybrid in-person and remote situations, that the dynamics can change a little bit. But I also think we need to take that time to connect at the personal level.

And sometimes making virtual meetings more inclusive is really again about the actual access of the meeting, so providing captions or providing presentation slides in advance or having a sign language interpreter or building in time for breaks so that people can go to the restroom and take care of themselves and get something to eat or get up, stretch and move around.

And so that's really crucial, but also not forgetting to just take that time to engage and to check in with one another, and it depends a lot on the dynamic that your workplace has how personal that gets, but there’s really no harm in taking time to do a wellbeing check with each other.

Rachel Salaman: Yeah, and one thing that some non-disabled people struggle with is whether or not to acknowledge a disability, and it can sound patronizing or ignorant if they do and insensitive if they don't, so what's the best approach for an ally?

Emily Ladau: It's an interesting dynamic to think about because you don't want to simply overlook or ignore an entire part of a person, but nor do you necessarily want to call attention to it, and so my best advice is really to consider context. Is it relevant to the conversation or the situation to in some way engage about a colleague's disability? If it's not relevant, there's no need.

A perfect example of this is thinking about language, so we are talking about disability if we're using disability as an identifier. Many people have different language preferences.

And so if in the course of a conversation you were talking about identifiers or you are continually referring to a specific person, it may very well be helpful to say "Hey, do you prefer that I say person with a disability or disabled person or do you have another preference?" Something like that.

Or if you're having a conversation where you might want to offer help, again totally relevant to perhaps in some way bring up or mention disability, but if you're simply curious or asking invasive questions, probably no need.

Unless in the context of the conversation it is relevant and you have that kind of relationship with that person where you feel like you can ask a question, and if somebody responds by saying that they don't feel comfortable responding, so be it.

Rachel Salaman: Drop it.

Emily Ladau: Yes, it's really, really individual.

Rachel Salaman: Yes. You make the point in your book that allies aren't there to help exactly, but rather to work side by side with disabled people to make a difference. How important is this nuance?

Emily Ladau: I actually think it's a crucial distinction because so often there is the perception that people without disabilities are doing things for or on behalf of the disability community. There's that expression "voice for the voiceless," and no, that's not what anybody is. Everybody has their own perspective regardless of how they communicate it – you're not anybody else’s voice.

And there's a saying in the disability community, "nothing about us without us," which is to say if you are engaging about anything having to do with disability, ensure that you have disabled people at the table.

But more so than that, many people have shifted to beginning to say "nothing without us," which is to say every issue is a disability issue because every issue impacts disabled people, and the people who know best what is right for them in that moment is the disabled person themselves, and the person who should be speaking for themselves is the disabled person themselves.

And so when we have this inclination to help, it can often result in talking over or speaking for rather than working alongside, advocating with, and I think that that distinction is crucial because in one you are essentially erasing the very person who you're claiming to advocate for.

Whereas when you're doing things side by side, what you’re doing is you're amplifying the perspective of the person who you are trying to be an ally to, and I think that is essential to recognize that difference.

Rachel Salaman: We've talked about some of what allies can do. What are some final tips to leave us with?

Emily Ladau: I want people to understand that allyship is very much a journey and not a destination, and so you can listen to a podcast episode, you can read an article, you can watch a documentary, you can attend a webinar or have a conversation with a disabled person, but that doesn't mean that you stop there.

My best advice is to keep learning, to keep going, to seek out new resources and new ways to learn and new ways to engage, because as I mentioned earlier on, if you've met one disabled person you've met one disabled person.

And so I come to you as someone who has a physical disability, who is a white woman, who identifies as heterosexual and as female, as the gender that I was assigned at birth, and I have not experienced housing insecurity, I've not experienced food insecurity, so I exist very much at this nexus point of privilege and of marginalization.

And that means that the only experience that I am an expert on that I can speak to fully is my own, and so if you have taken the time to listen to this conversation today or read through this conversation, the transcript, I am incredibly grateful, I am, but know that this is just one point in a broader journey of allyship.

Rachel Salaman: Emily Ladau, thanks very much for joining us today.

Emily Ladau: Thank you so much for having me.

Rachel Salaman: The name of Emily's book again is "Demystifying Disability: What to Know, What to Say, and How to be an Ally." You can find out more about her and her work at her website emilyladau.com. I'll be back in a few weeks with another Expert Interview. Until then, goodbye.